About the Pulmonary Hypertension Service

Pulmonary hypertension is a rare lung disorder which sees excessively raised blood pressure in the pulmonary artery. As part of the Cardiorespiratory clinical unit at Great Ormond Street Hospital (GOSH), the Pulmonary Hypertension service is a National Commissioning Group (NCG)-supported specialised service of the NHS.Funded by the NCG, our mission is to care for all children with pulmonary hypertension in the UK.

We provide state-of-the-art diagnosis, medical treatment and overall care, including psychological and logistical support for those diagnosed with all types of pulmonary hypertension. These include:

• idiopathic pulmonary hypertension
• pulmonary hypertension caused by congenital heart disease
• connective tissue disorders
• chronic lung disease

The Pulmonary Hypertension Service at GOSH covers England, Wales, Scotland, Northern Ireland, and also co-operates with the Republic of Ireland, working with eight major regional hospitals in which we perform outreach care in the form of shared outpatient clinics. These take place, depending on patient numbers, two to four times per month.

Within London and our hospital, we co-operate with a number of clinical services to ensure we not only cover pulmonary hypertension in all its variants and implications, but also the general paediatric aspects which are part of this disease such as endocrinology, haematology and more. We also treat and advise patients from Europe and overseas.

Our activity is reported and supervised half-yearly to the NCG commissioner. We care for circa 320 patients with different diagnoses and ages in hospital and as outpatient appointments (circa 500/year).

Children undergo a thorough assessment and are treated with new, novel therapies including drugs which have only become available very recently. Previously, such children were untreated.

Children with advanced lung disease are assessed for lung transplantation.